The Dysautomaton

Exploring dysautonomia through science and story—personal experiences, practical tools, and research to help you feel informed, seen, and supported.

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I just started this thing, so hold onto your britches a bit. But also change them once in a while, even or especially when the effort sees too great. Dysautnomia doesn’t mean you have to smell bad. (And you can put your britches on while lying down, giving lie to the old, “He puts his pants on just like any other man, one leg at a time.”)

An oil painting closely inspired by Jacob Toorenvliet's "Doctor's Visit" — a physician seated beside a reclining or seated unwell patient in a modest interior, warm candlelight or window light, rich brown and amber tones, deep shadows, 17th century Dutch Golden Age style, fully clothed figures, intimate and compassionate mood, no green tones, painterly texture, chiaroscuro lighting

Science & Story

Why I Write About Dysautonomia

I write about dysautonomia because of the way it has upended my life. I write because I look OK to everyone else, but I can’t do what someone who looks like me is supposed to be able to. Work a long, hard slog. What else? My dog is underwalked, my musicianship is deteriorating, I can’t go on a hike, I can’t work in my garden in the summer for the heat.

Let’s face it: things suck. And before you go thinking “Well, at least….”, remember that that is the absolute worst thing you can say to anyone (except, perhaps, “I’m glad things suck for you, and I hope they get worse”). That kind of thing reduces the permission for unhappiness and suffering to only the worst-off person in the world.

And another thing: That which doesn’t kill you makes you stronger? Bologna! It often leaves you wounded and broken by the side of the road. (You can use this if you are talking about your dinner, as in: “If this meal doesn’t kill me (or give me explosive diarrhea, it will make me stronger” . Generally, food that doesn’t kill does make you stronger, or better nourished at least.* )

I write about dysautonomia in the hope that one day I will feel better.

*Unless, of course, you’re overeating the wrong things to the point where your arteries clog or you can’t get around anymore. In that case, no, food is just gumming up the works, as well as your arteries. Actually, just don’t use the saying. It belongs on motivational posters, which means it belongs in the trash.

The Approach